Steele was finally extubated last night around 5pm and put on oxygen through a nasal cannulet at 3 liters. All is progressing well with him except for the heart arrhythmia. His upper right chamber and lower right chamber are not talking to one another in the correct sequence, so the pace wires are active. This is not an issue until day 7, then they will be talking about a permanent pacemaker. Yes, there is always one more thing, but for what he has been through, he is looking very good with the new remodel.
Steele is really fussy as he weens off the narcotics, so we are giving him pain medications as needed (PRN's). Rachel was able to hold him last night since pre-op, and that was awesome. The machines are slowly coming off and he was given a PIC line to receive the drips. Hopefully they will take out the central line in his neck by this evening. Steele's got more holes in him than a firing range target, he is so freaking tough.
Rachel and I are working our hospital shifts in 12-14 hour increments, and Ryleigh is getting to know her grandmother quite well these days.
The big goals are to get the fluids drained off so the tubes can be removed from his abdomen along with the arrhythmia issue before he can walk around / move out of PICU.
The journey goes on friends! Until next time....
Baby Steele
Thursday, December 13, 2018
Wednesday, December 12, 2018
Fontan OHSU PICU Day 2
Good morning friends and family,
First of all, thank you all for your prayers and thoughts yesterday. As parents waiting in hospital purgatory, your messages mean more than you know. It was a stressful day for everyone, but you all ease the mental work of it all.
Back to the patient, Mr.Steele. He did well overnight, sedated and comfortable. The only hiccup was heart arrhythmia. This was to be expected for children who have his condition and fontan surgery. The nerves that do the "firing" of his ventricles are out of sync, so the surgeons place pacemaker wires as a preventative measure to control the heart rhythm if necessary. His surgeon stopped by and gave the thumbs up on everything else and the fellow on the unit said the arrhythmia should not be a permanent problem. Time will tell as usual.
There is a plan to extubate this afternoon so he can start to breathe on his own, which moves along everything else in recovery. Steele began to wake up around 1000 and was moving his lips that he had "owies". We're so sorry bud, so more meds to calm you down until extubation.
Rachel and I are doing much better after a much needed nights rest. Ryleigh has made her list for Santa, which includes "infinity roblox and her whole bedroom to be roblox and put the rest of the stuff on the ground"?? I'm not sure what the translation is Santa, but there you go.
Thank you to SaaSaa for all the help with everything, we are truly grateful.
First of all, thank you all for your prayers and thoughts yesterday. As parents waiting in hospital purgatory, your messages mean more than you know. It was a stressful day for everyone, but you all ease the mental work of it all.
Back to the patient, Mr.Steele. He did well overnight, sedated and comfortable. The only hiccup was heart arrhythmia. This was to be expected for children who have his condition and fontan surgery. The nerves that do the "firing" of his ventricles are out of sync, so the surgeons place pacemaker wires as a preventative measure to control the heart rhythm if necessary. His surgeon stopped by and gave the thumbs up on everything else and the fellow on the unit said the arrhythmia should not be a permanent problem. Time will tell as usual.
There is a plan to extubate this afternoon so he can start to breathe on his own, which moves along everything else in recovery. Steele began to wake up around 1000 and was moving his lips that he had "owies". We're so sorry bud, so more meds to calm you down until extubation.
Rachel and I are doing much better after a much needed nights rest. Ryleigh has made her list for Santa, which includes "infinity roblox and her whole bedroom to be roblox and put the rest of the stuff on the ground"?? I'm not sure what the translation is Santa, but there you go.
Thank you to SaaSaa for all the help with everything, we are truly grateful.
Tuesday, December 11, 2018
Day of Post Fontan
Steele and his team did it! Here's the breakdown:
645am: Anesthesia & sleep
715am: Insert lines (IV, Arterial & PIC)
845am: Dissect, longest part of surgery is getting through scar tissue from previous 2 surgeries
1045am: Started Bypass
1100am: Surprise decision to reconstruct pulmonary arteries where they were stuck to aorta
1230pm: Aortic Arch reconstruction
130pm: Fontan surgery started (shunting blood from inferior vena cava to the lungs)
230pm: Fontan partially complete, begin tricuspid valve repair
245pm: Finish valve repair and other half of Fontan
300pm: Surprise decision to tuck a diaphragmatic hernia back in place since they were in there
315pm: Echocardiogram to make sure all heart repairs working before closing him up
345pm: Closing Steele up
500pm: Moved out of OR into PICU
Essentially two extra things were done that were not anticipated, and this is why the surgery lasted 7 hours.
We are back in the PICU with him now. For the first time ever, we are seeing his oxygen saturation levels above 90%! They do not plan on extubating (removing ventilator) until tomorrow morning. He just started to wake up and his vitals are being translated by one of the doctors that he is angry. Totally understandable, buddy. We are sorry you had to go through all of this today and we can't wait to help you recover and heal.
Day of the Fontan
Steele went back into surgery at 7a. They will start his PIC (peripherally inserted catheter) line and IVs and arterial lines. The plan is that surgeons will open him up around 8a. They will cool him to a hypothermic state to lessen the oxygen demands of his tissues: brain, muscle, and heart have a high need for Oxygen, so when he is cooled to 23 Celcius they can essentially stop his circulation without repercussion while they begin the surgical repairs.
1- First up is the tricuspid valve, which will receive a few stitches to reduce regurgitation (backward flow of blood) and thus make Steele's right heart a more effective pump.
Next up is the 2- aortic arch repair. Steele had a stent placed in his aortic arch in late 2015 to keep it open. He has outgrown the stent so the surgeons will need to fillet the stent open and patch cadaver tissue around it to reconstruct the arch into a larger diameter vessel.
Finally, will be the 3- Fontan surgery. This is the typical 3rd surgery for HLHS kids where the inferior vena cava, the vessel draining "blue" blood from his abdomen and legs, is rerouted to the pulmonary arteries with a long shunt. This will make it so that ultimately, Steele's heart does not pump blood to the lungs anymore because the blue blood is rerouted passively to the lungs. All Steele's little half heart has to do is pump the oxygenated blood to the body after it has returned from the lungs. I am calling Steele's heart "little" because it only has half the function chambers and valves of a normal heart, however, since his heart works so much harder than most, it will, of course,
All in all, the surgeons expect Steele to be on heart-lung-bypass for about 2 hours and the entire surgery should last about 6 hours.
Tuesday, November 27, 2018
November 27, 2018
Hello Friends!
I know it has been a while. Life moves on and so does Mr.Steele. He has a big day coming ip on December 11th. Steele has visited the Cath Lab for some final pictures before the surgery to take measurements and look around for anything new since his last operation back in 2016. Steele is 3.5 years old now, weighs about 19 kg's, and is a healthy young boy ready for his next big moment in life, The Fontan surgery. Below is a magnified picture of his Aortic Arch with the original stent that was placed to rebuild his interrupted arch during the Norwood surgery. After the Cath Lab visit at OHSU, his team went round and round about what to do with the stent issue. When you look at the image, you will notice how much larger the vessels are on the left and right of the stent. This is causing an unnecessary amount of blood to flow in that area which can cause his heart to work that much harder, so that needs to be fixed. There were all kinds of discussions on what to do, but we settled on making an incision in the current stent and grafting tissue to both sides, like a clam shell, so the stent will not have to be removed and the tissue will grow with him into early adulthood. In addition to the Fontan & stent procedures, he will also have a stitch put in his mitral valve due to leakage. I know a tall order for one day.
We have been assured that this can happen in one stage vs. 2 stages, but it will be a very long day for everyone.
Our family is doing well, Ryleigh is 2nd grade, Rachel is teaching at PCC, and I continue the never ending task of educating our youth in high school. I will be updating this is often as I can as the surgery date gets closer and continue our journey together in the hospital as well.
Thanks to all who continue to support our family during these life changing phases. Happy Holidays!
I know it has been a while. Life moves on and so does Mr.Steele. He has a big day coming ip on December 11th. Steele has visited the Cath Lab for some final pictures before the surgery to take measurements and look around for anything new since his last operation back in 2016. Steele is 3.5 years old now, weighs about 19 kg's, and is a healthy young boy ready for his next big moment in life, The Fontan surgery. Below is a magnified picture of his Aortic Arch with the original stent that was placed to rebuild his interrupted arch during the Norwood surgery. After the Cath Lab visit at OHSU, his team went round and round about what to do with the stent issue. When you look at the image, you will notice how much larger the vessels are on the left and right of the stent. This is causing an unnecessary amount of blood to flow in that area which can cause his heart to work that much harder, so that needs to be fixed. There were all kinds of discussions on what to do, but we settled on making an incision in the current stent and grafting tissue to both sides, like a clam shell, so the stent will not have to be removed and the tissue will grow with him into early adulthood. In addition to the Fontan & stent procedures, he will also have a stitch put in his mitral valve due to leakage. I know a tall order for one day.
We have been assured that this can happen in one stage vs. 2 stages, but it will be a very long day for everyone.
Our family is doing well, Ryleigh is 2nd grade, Rachel is teaching at PCC, and I continue the never ending task of educating our youth in high school. I will be updating this is often as I can as the surgery date gets closer and continue our journey together in the hospital as well.
Thanks to all who continue to support our family during these life changing phases. Happy Holidays!
Thursday, June 30, 2016
G-tube & Discharge
Hello Friends,
Rachel and I brought Steele into OHSU on Tuesday (6/26) around 7am for surgery admit. After all the measurements and discussions with Anesthesia, Surgery Plan, and Recovery, Steele was off to the OR at 11am. He was given a sedative of Ketamine through his nose and 5 minutes later, he was whisked away through those double doors. It is still not easy to let your baby go, no matter how many time we have done this routine. Rachel and I took a walk and ate some food, which made us both feel more at ease. We sat outside and tried to relax waiting for the pager to buzz a message. Around 130 pm, we got a message to return to the waiting room to talk to the surgeon.
The surgeon came out and was very happy with how the procedure had gone. Steele had no issues with the anesthesia this time, but he had a small hernia in his lower right side of his groin. Nothing to worry about, but to just be aware of. There was also a small hole in his diaphragm that may cause him some discomfort when eating solid foods, but again, just watch for pain and vomiting. The area around the incision for the tube is also a big concern with infection and tugging. He will not be able to be submersed in water for about 2 weeks until the stitches dissolve and the incision has had time to heal around the tube. Apologies for the poor quality photo, Steele is getting very good with his hands.
Once he came out of anesthesia, we were there to greet him and hang out for about an hour before moving into the PICU for the evening. As soon as we all arrived in the PICU, a stream of greetings began to flow into our room from all our past doctors, surgeons, and nursing staff. It was really cool to see everyone again. The PICU is a pretty depressing place, but very familiar for Rachel and I, so good to be in a place that is not shocking at this point in the game. We got settled in and had some dinner in the room and I took off for the evening while Rachel stayed overnight.
I got a text from Rachel indicating that they were moving him to the "floor" around midnight. Good news! In the morning I headed over to his new room and help Rachel clock out and time for me to clock in. I worked with the cardiology team and nursing team to meet all of his feeding goals for the evening and plan discharge. I moved as quickly as possible to get the discharge orders written up, signed and rolling out of the unit at approximately 8:30pm. Best discharge to date, smooth quick and home by 9pm.
Steele slept all night long doing just fine with his new gas hose. You could tell in the morning that he was super stoked to not have the tube down his nose. It's amazing how plastic our minds are to realize the slight changes that are so monumental for our personal happiness. Steele.
We are are home now trying to manage the gas tube, yest that it what I cam officially calling it. Everything is going fine thus far, the biggest concern and infection and tug on his new toy.
Talk soon friends.
Pre-op 7am waiting, waiting, waiting.....
Rachel and I brought Steele into OHSU on Tuesday (6/26) around 7am for surgery admit. After all the measurements and discussions with Anesthesia, Surgery Plan, and Recovery, Steele was off to the OR at 11am. He was given a sedative of Ketamine through his nose and 5 minutes later, he was whisked away through those double doors. It is still not easy to let your baby go, no matter how many time we have done this routine. Rachel and I took a walk and ate some food, which made us both feel more at ease. We sat outside and tried to relax waiting for the pager to buzz a message. Around 130 pm, we got a message to return to the waiting room to talk to the surgeon.
The surgeon came out and was very happy with how the procedure had gone. Steele had no issues with the anesthesia this time, but he had a small hernia in his lower right side of his groin. Nothing to worry about, but to just be aware of. There was also a small hole in his diaphragm that may cause him some discomfort when eating solid foods, but again, just watch for pain and vomiting. The area around the incision for the tube is also a big concern with infection and tugging. He will not be able to be submersed in water for about 2 weeks until the stitches dissolve and the incision has had time to heal around the tube. Apologies for the poor quality photo, Steele is getting very good with his hands.
All medications and nutrition will go through this "gas hose" from now on. His belly is still swollen from the surgery. He was so happy this morning not to have a tube in his nose!
I got a text from Rachel indicating that they were moving him to the "floor" around midnight. Good news! In the morning I headed over to his new room and help Rachel clock out and time for me to clock in. I worked with the cardiology team and nursing team to meet all of his feeding goals for the evening and plan discharge. I moved as quickly as possible to get the discharge orders written up, signed and rolling out of the unit at approximately 8:30pm. Best discharge to date, smooth quick and home by 9pm.
Steele slept all night long doing just fine with his new gas hose. You could tell in the morning that he was super stoked to not have the tube down his nose. It's amazing how plastic our minds are to realize the slight changes that are so monumental for our personal happiness. Steele.
We are are home now trying to manage the gas tube, yest that it what I cam officially calling it. Everything is going fine thus far, the biggest concern and infection and tug on his new toy.
Talk soon friends.
Monday, June 27, 2016
First Birthday & Gtube surgery
"I can't eat it yet, but it sure is fun to play with!" Thank you Auntie Katie for such a beautiful cake!!
Steele has been through a journey that most will never travel along in their first year of life. Reflecting back on all the hospitals, surgeries, moves, multiple schools for Ryleigh, and infinite decisions that have been like a choose your own cardiac adventure novel. It's hard to believe a year has passed so quickly.
Steele had his monthly routine cardiology appointment at OHSU. His weight numbers were dropping and after a throat appointment to check his vocal chords for damage, we found out that the NG Tube was causing some inflammation. The decision was now to leave the tube in or have an elective surgery for a Gastrostomy tube (also called a G-tube). The G-tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. It is unusual for kids that are the same age as Steele still have an NG tube for nutrition.
Rachel and I discussed all the options around this surgery with Steele's Cardiology team and his SLP. The SLP would not continue working on his feeding due to the throat inflammation and the cardiology team wants to see better weight improvements. We decided that the surgery is necessary for his overall health and the ability to start eating without the NG tube. To be honest, we are at the end of our rope with the constant worry of the NG tube. We have to insert the tube through his nose 3-4 times a week, which is never a pleasant experience for everyone involved. Steele's prefrontal cortex is mapping memory, the trauma of the NG tubes benefits do not outweigh the overall function for his development and growth.
Steele goes back to OHSU tomorrow morning, June 28th, for surgery. We met with the surgeon last week to go over all the procedure risks. He will be admitted in the morning and hopefully discharged two or three days later. We will get to revisit all of our friends in OHSU PICU once again.
The butterflies start to flutter in our stomachs again. This surgery is not nearly as invasive as the previous two, but there is always a high risk with anesthesia and his heart condition. We just pray for the best outcome, it's never easy to send him through those double doors on the surgery floor however.
Here we go again friends of Steele. Please send out your prayers and good thoughts for him tomorrow!
Monday morning, say bye-bye to the NG tube!
Relaxing on a Monday morning. No more tube face tomorrow!
I will do my best to keep the blog updated. Thanks for all your support and love for Steele.
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